Our euphoria with the G-tube at home lasted approximately a day and a half after our hospital discharge. The good news: it’s still so easy feeding Andrew! Just put the formula through the tube and then done! The bad news: No matter what the rate or volume of feed through his new Kangaroo Joey Feeding Pump, Andrew is miserable, gassy, and needs to be vented constantly. The food basically comes back out whenever we vent him. For a while, we had reasonable success feeding him via gravity feeds using a syringe, bolus-style. But while he could tolerate 4 ounces of formula at first, he became increasingly less tolerant. It went down to 3 ounces, then 2 ounces. And now he can only drink 1 ounce at a time without vomiting it all up almost immediately. He also spends most of the day chewing on something, swallowing more air, constantly refluxing, and occasionally gagging. Lovely. So he has lost two pounds since he’s had his g-tube placed and is back down to a whopping 18 pounds. Our GI doctor and the surgeon are obviously concerned. But I think it’s clear they have no idea what’s going on, exactly. Andrew’s been drinking 3-5 ounces total the past couple of days. We were hoping he’d have a minimum of 30 ounces after the surgery. I think it’s just a weird cerebral palsy-related neurological thing and, hopefully, the food intolerance will pass.

And, of course, another night in the hospital. This time, for an overnight EEG to see what was going on with Andrew’s seizures. Basically, whereas we couldn’t see his seizures before, we can definitely see them now. And, apparently, Andrew is having seizures all day long. They may look pretty benign but are rather sinister: he tenses a bit, looks up , and gazes to the right or left. When most people watch him, they think he is being curious and adorable. I don’t usually share that they’re seizures. The other seizure type he has is that he looks as if he’s completely zoned out and it’s difficult to get his attention. So, for now, he will continue with a medication called Zonegran/zonisamide. We’re just going to add a fairly new drug called Banzel/rufinamide to his daily cocktail of drugs. Banzel is a fairly new FDA-approved drug for the treatment of Lennox Gastaut Syndrome. Seizures, at their worst, have a way of stealing the essence of a person. For Andrew, it means he is often in his own world and unable to come out of it easily, unable to smile, unable to respond to external stimuli.

Adding to Andrew’s thrilling week, we took him to his first dentist appointment today. Unlike his twin, Eleanor, who has lovely pearly whites, Andrew’s teeth have always been tiny, chipped, yellow, and stained. The weak teeth situation is likely a result of his prematurity, poor nourishment from not eating in the NICU for four months, and the countless number of medications he has been on. Fortunately, there are no cavities. We are to return in six months, however, when all his baby teeth are in. At that point, Andrew will likely be sedated, taken to the OR, and have his teeth all restored and covered with a protective enamel of some sort.

But between his feeding and neurological woes, Andrew has been a bit listless, sad, and rarely cracks a smile anymore. The poor guy just looks exhausted :(. Hopefully, our next update will be a more positive one.

Dad holding Andrew during the dentist visit. Thankfully, the exam itself was very short.

Andrew's new wheelchair stroller, the Convaid Cruiser, is here! We love it. More on this later.

Andrew's new Wombat Snug Seat is also here! I see a lot of possibility with this one but not until Andrew is healthier and more comfortable.

16 Responses to G-tube Woes, More Seizures, First Dental Visit

Poor baby – sounds so similar to my Ashlea. Her feeding has always been a nightmare and it has taken years to be able to do bolus feeds. If she hadn’t had a fundoplication she would still be throwing up the majority of her feeds. She now has mostly overnight feeds – very little during the day.
Also – teeth – can relate to that. Ashlea has no cavities but her teeth are ground down to cracked, yellow little stumps.
I hope he feels better soon.

HI, Alison. Even if it has to take years (which I am finding it sometimes does), I hope we can get to a fairly regular schedule like your Ashlea. I’ve considered the nissen-fundo but it scares me for some reason! I have to do some more research on that. One of my paranoias about it, which may or may not be true, is that I have read it gets rid of much of the ability to vomit but not the desire and physical urge–which, frankly, sounds really uncomfortable! But I know it has done wonders for many kids. Our doctors have suggested a possible jejunal tube..

Hi — I’m so sorry to hear about all of these challenges! Our son had trouble tolerating his g-tube for the first week or two but he was much older (4 years) and he didn’t vomit (it’s so long ago now that I don’t remember much about it).

Are you on a g-tube e-mail list or part of a group? It would be great if you had contact with lots of other parents going through similar things with kids Andrew’s age. The same thing with the seizures!

I hope you give yourselves a chance to cope with the most pressing things and put things like the dentist/non-essential appts on the backburner. You just can’t do EVERYTHING!

I LOVE Andrew’s wombat seat. Very cool. And he seems to like it too. Take care of yourselves!!!

Hi, Louise–thanks for the words of support! I am actually part of wonderful facebook groups for infantile spasms and feeding tubes. The consensus on the feeding tube situation appears to be that beyond a nissen surgery, most medical professionals won’t really know what to do and families should will just figure it out after weeks, days or months of trial and error. So, I have a gut feeling we are headed on that road. Also, I know, I totally considered canceling the dental appointment! But we’ve been in the hospital or doctor’s office every day for the past three weeks so I figured “can it get much worse?” Next week our schedule is cleared of any doctors appointments (so far) and this excites me beyond anything.

I’m so glad you have the support and knowledge sharing that you do. I was aware of the seizures you described when I last visited. Feel free to be frank with me, supermama. You and Mike are such wonderful parents. Thanks for blogging. Love you.

Oh poor dears. I thought Andrew had the Nissen done at the same time. We put off the fundo decision for a long time too – 14 months.. We fed N through an NJ for a year before the Gtube placement. (Which is not exactly the same as a GJ, but I’d imagine feeding tolerance would be similar) I’m no GI doc, I’d imagine but feeding through a J would be tolerated by almost anyone because it’s a continuous drip. We were feeding N 20 out of 24 hours. The downside is that Andrew would have a tube and pump attached for that duration.

I can’t comment about nissen/gtube in general, but I can tell you how it went with N. He had severe GERD and the NJ did not stop vomiting entirely, but it cut down the frequency from 8 times a day to 1 or 2. He would bring up stomach juices/swallowed drool when he did throw up. So an J would not prevent aspiration if Andrew has any trouble with that. Now that N has a gtube/nissen in place, he still does retch 1-2 times a day, but does not bring anything up. IMO, he’s less upset when retching vs when he actually throws up. He cries but isn’t inconsolable.

It’s a really tough decision, whether to fundo or not.. we considered many factors (his total oral aversion, his age, aspiration issues, CLD) and did a bronchoscope/lavage of lungs before we finally did the op. Now we are pretty happy with the result: his oral aversion hasn’t changed (yet), he’s a little happier because of not throwing up and he gets to take off his backpack for half the day.

Thinking of you. It’s been a long time since I’ve been in your shoes. My first born started having severe seizures (status epileptus episodes) at 16 weeks of age and I remember these days so well. I did not have all the other things to contend with as you do, with twins and all of Andrew’s other issues. You are an inspiration! Your children are beautiful and your story is so full of love and all the things of real motherhood. I am really inspired by you. So glad I found your blog 🙂

Hi Jen — I think your e-mails may be going into my spam. Can you let me know when you could send some photos we could run with your piece on the blenderized diet? They need to be high res — of you and Andrew, and perhaps of the twins together? Thanks! louise